Lupus is not AIDS
Lupus is an autoimmune disorder (the immune system attacks itself), not an acquired immune deficiency syndrome, or AIDS (a virus brought on by sexual transmission, affected blood and body fluids or from mother to childbirth) as I once thought.
On a hot summer day in 1999, I was rushed to the ER for lethargy and extreme fatigue. I had just finished grocery shopping and thought that I was tired from burning the candle at both ends. I'm a single mom of two sons with autism, each with different challenges of their own. From playing referee to adhering to their different personalities, it left me exhausted on a constant basis.
On this particular day, however, I felt totally lifeless. My phone was disconnected as I recall using my elderly neighbor's phone to call 911. I managed to tell the operator to send help quickly before I noticed that my speech became slurred, and I had slumped to the floor.
When the paramedics came, they questioned me but I couldn't explain myself. Upon arrival to the ER, I was given oxygen and blood transfusions shortly after. I still could not speak but I was aware of what was being said and done around me. I recall hearing a lot of medical jargon being used about me from the doctors as if I didn't exist. I remember seeing my dad burst into tears when he came in to see me. I never saw my dad cry before, or display any other emotion for that matter.
I came back to life so to speak after a series of tests and procedures. I was later told that I had lost oxygen from my brain which caused the lethargy and slurred speech. My platelet count was extremely low which caused my physical weakness--my blood had lost its ability to clot.
I remembered the Alfred Hitchcock episode starring Joseph Cotten. He was in a coma, hearing everything being said around him by the doctors. The doctors spoke about doing an autopsy as he struggled to tell them that he was alive. It was a narrative of sorts and just when the doctor was applying his scalpel, a tear fell from Cotten's eye. I will always remember this episode because that was my ER situation. I told my mom if something drastic like this happened, if I was in a coma, give me at least three days or so before pulling the proverbial plug.
My follow up visit with a rheumatologist confirmed that I suffered from mixed connective tissue disease and TTP-thrombotic thrombocytopenic purpura. Prior to this diagnosis, I asked the doctor, "What's wrong with me--do I have AIDS?" He replied, "Why do you think that? If you had AIDS, you would be dead already."
That statement creeped me out as I didn't know whether to be happy or cry. He told me that my symptoms were caused by a virus but it wasn't AIDS related. From 1999 to 2004, I had suffered more flare ups and endured more blood transfusions and procedures before I was finally diagnosed with systemic lupus. In 2010, lupus nephritis was added to the label as lupus attacked my kidneys. I was given three Cytoxan treatments (chemotherapy) for the diffusion of cells on my kidneys.
Currently, my kidney function is fine but I had recently suffered from severe anemia, landing me in the hospital three times from January to March this year. More blood was transfused in addition to iron. I experienced a lot of pain in my joints and muscles and was given morphine, the most powerful pain medication a hospital can give.
I'm doing much better now but not quite out of the woods yet. I have to watch my stress level to prevent another flare up. This is tough to do as my household status has not changed. In fact, I'm enduring more stress in consoling my mom not to worry so much about me. I'm finding myself sneaking around to do things as my mom would otherwise have me sitting in bed, knitting or something.
Lupus is not AIDS, although the same precautions should be taken to assure good health. Both cases involve stress management and not being around others who are sick. Both cases involve the use of myriad medications. Both cases involve the need for therapy, as the quality of life has changed. Both cases are very isolating albeit lupus is not looked upon as being contagious as AIDS. In either case, on-going research and education is key to understanding.
Por Sabrina Nixon
20 de Mayo de 2015 - 9:48 am
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